Living with HIV for 33 years: A San Francisco survivor’s tale on World AIDS Day

‘When you go to three or four funerals a week, it takes its toll’

Forty years ago, the first reports of a mysterious illness in San Francisco emerged. It was June 1981, just a couple weeks before Paul Aguilar’s 18th birthday. By the end of that summer, “my friends started dying, and they haven’t stopped,” he says.

Aguilar received a positive test for HIV in 1988, when a diagnosis was still a death sentence. With every day that passed, he recalls wondering whether it would be his last. But today, nearly 33 years later, that day has yet to come.

Living with HIV for more than half his life, Aguilar often wonders why he survived while so many of his loved ones perished at the hands of the merciless virus. But instead of being paralyzed by guilt, he has committed his life to supporting the community of long-term survivors.

Ahead of World AIDS Day on Wednesday, The Examiner spoke with Aguilar about the lasting impact of the epidemic that struck at the heart of San Francisco, what it feels like to be a survivor and the lessons The City should learn from the experience of the HIV/AIDS crisis.

There aren’t many people who lived through the worst of the epidemic in San Francisco and are still here to share those stories. What was it like? I am one of about three people still alive from my social circles back in my 20s. It was a really horrific time. When you experience that kind of loss, when you go to three or four funerals a week, it takes its toll. When I was diagnosed, I felt tainted. I felt dirty. I was living in Haight-Ashbury, and that became a ghost town. So did the Castro. It was like living skeletons were walking down the street. But I will say that the one thing that came out of it all was that AIDS united the community in a way nothing else has. All of the intersectional squabbling was put aside. We were fighting for our lives.

Were you scared? Getting diagnosed back then was a death sentence. I was told I had five years to live, and they weren’t going to be pretty. You would go to the bars, see a friend there, and then they would never come back. They were literally gone. We were doing fundraising for funerals, and fighting to keep people from being evicted because we had no protections. When the doctor told me I tested positive, things became a blur. I just knew I had to get out of the clinic. I coped by drinking. A lot. Then a mentor of mine asked me whether I wanted to be someone who died of AIDS or someone who lived with HIV. I decided I needed to get involved, so I started volunteering with the AIDS Foundation and the AIDS Walk, in particular, and I told my parents. I thought I would be disowned, but they ended up volunteering with me for a decade.

What about the rest of The City? When AIDS first hit, a lot of people thought it was killing the right people: the Haitians, the hemophiliacs and the homosexuals. It was a gay disease until it wasn’t. There was a ton of fear and disinformation. They closed the bathhouses, and people were told not to come back to their local gym. It was worse than being treated like a leper. And the most devastating part of it was that nobody cared.

Paul Aguilar stands next to a display of past residents of Marty’s Place who have died of HIV/AIDS. (Craig Lee/The Examiner)

Paul Aguilar stands next to a display of past residents of Marty’s Place who have died of HIV/AIDS. (Craig Lee/The Examiner)

Today you do a lot of work with long-term survivors. Why’s that so important to you? Every single day when I wake up, I think about my friends who aren’t here. I am 58-years-old now. That makes me an elder in our community because AIDS took all the other ones. We won’t be here forever. I find it really important to make sure that our story isn’t forgotten. If you get rid of the word AIDS or the understanding of how this virus devastated our community, you have just discounted my entire life. There are so many young people now who don’t know someone who died because of HIV/AIDS, and that’s a good thing, but it also means that this story and these lessons could soon be forgotten. We can teach people about how we took on the government, how we made the changes we did. We can reduce the stigma not by pretending it never happened, but by educating people. My role as someone living with HIV is to make sure nobody forgets what actually happened — because when people hear about the pain and devastation of it all, they almost don’t believe it. Those who do not learn from history are doomed to repeat it.

What are some of the main issues faced by long-term survivors? First off, there isn’t just one kind of long-term survivor. There are those of us who are living with the virus, but there are those who went through the devastation without contracting the virus. They suffered the same devastation, and yet people often forget about them, too — those who volunteered, those who cooked meals, those who raised funding for funerals and treatments for loved ones. As for those of us who are currently living with HIV, about half nationwide are over the age of 50. Here in San Francisco, that’s more like 68%. Our bodies have aged faster under the stress of the virus and the medications used to treat it, but we have no clue how those impacts will look as we continue to get older. We want to bring attention to the need to focus on treatment for geriatric HIV patients. Additionally, many of us struggle financially. Medication is incredibly expensive, and now we are living on disability. In San Francisco, finding housing for aging HIV patients is key. If you aren’t housed, you can’t take your medications every day to keep the virus at bay.

You already lived through one public health crisis. What did it feel like to watch as the COVID-19 pandemic unfolded nearly 40 years later? Talk about being triggered. All I could think was here we go again. When I saw those mass graves in New York City, I was frozen. I felt this visceral fear of having to watch people die again — and I knew that was why I survived. I’ve always wondered why I made it, why I’m still here. That’s part of the survivor’s guilt. But then it hit me — when we were going through the AIDS crisis, we didn’t have people who had been through something like this before. With COVID-19, I decided that I could be a resource to people and help them get through this time as someone who had lived through something similar before.